ameslouise
Moderator
- Joined
- Feb 11, 2010
- Messages
- 2,823
I have a long story, like most people on here, so I will try to keep it as short and interesting as possible!
I was diagnosed with Ulcerative Colitis in 1995. I managed this fairly effectivey with sulfasalazine, and steriod enemas to control flare ups. These flare ups came about once a year. They always coincided with my attempts to quit smoking. I understand it is fairly common for folks to get their first flare up from UC after quitting smoking or a similar "trauma" on the body, like having a baby.
I had a major UC flare in 2001 after the birth of my son. We could not get it under control and I ended up in the hospital for a month - IV steroids, cyclosprorene, nothing was helping. My last colonoscopy suspected I may have Crohn's, not UC, so we started Remicade and I was released from hospital.
My colon perforated 3 weeks later. The working diagosis was still UC, so my colon was removed and I was given an ileostomy. I had a j-pouch formed a year later, and my final ileostomy take-down 3 months after that.
Life was great for 7 years! No colon, so I was disease free! Woo hoo!
Good for me that I quit smoking FOR GOOD in May 2007, but a year later, I started having issues.... urgency, frequency, accidents.
A j-pouch scope revealed severe inflammation - CD was again discussed as a possibility, but my doc decided it was more likely pouchitis. We treated FOR A YEAR on and off with heavy antibiotics. Another scope in June 2009 determined that it was CD for sure.
I can't tell you the disappointment and utterly crushing feeling of being diagnosed with a chronic disease after thinking since 2001 that I was DONE with diseases. I still have difficulty wrapping my head around it and part of me refuses to believe I actually have Crohn's Disease. It's still hard for me to make the words come out of my mouth.
I opted for Remicade, but had a bad reaction after 1 treatment. My doc and I went back and forth about what to try - Imuran, Methrowhatever, Humira, etc. He really wanted me to go with Humira. But my gut feeling was that this was not the drug for me. I read lots and the success rate didn't seem as high as I would like. And the side effets, while rare, were too scary for me (Lymphoma? No thanks.) Understand that I get EVERY side effect of any drug I ever take. I had a reaction to cyclosporene that my doc had only seen once in 30 years!
Fate, kismet, karma - whatever you call it - led me to consult a doctor that practices Functional Medicine. "Treat the patient - not the disease." I opted for his suggested course of treatment - drastic diet change, heavy course of pro- and prebiotics, vitamins, supplements, nutrient infusions, wheat grass juice every day!
I feel better than I have in 2 years. I am still tapering down off the prednisone (boy, does that take a long time!) and am currently at 20 mg (started at 40 mg 6 months ago). My "traditional" doc thinks I am off my rocker, but the proof is in the numbers. My c-reactive protein is almost down to normal. I feel great. I look great.
The lifestyle changes have been very difficult and the treatments very expensive. Of course, they are not covered. The Humira costs $15,000 a year on average, with a monthly co-pay for the patient of about $20. I only wish I could have even a fraction of the money the insurance company is willing to spend on that drug to put toward my alternative course of treatment!
I still struggle with the diagnosis. It has been very consuming for me and I look forward to a time when I can wake up and not think about it, even for one day. But for now, I press on. I am thankful to have a very supportive husband, without whom I don't think I could get thru this, parents, in-laws, employer, etc. Being "sick" has shown me just how lucky I am.
The dietary changes (mostly vegan except egg whites and small fish) have been challenging but forced me to be really creative. I spend most of my free time in the kitchen (and thankfully NOT in the bathroom!).
So this was not as short as I would have liked, and even if no one reads it, I feel better getting it all out there in words.
I am thankful to have found this site as reading about other's experiences has been really helpful. Thanks for listening!
- Amy
I was diagnosed with Ulcerative Colitis in 1995. I managed this fairly effectivey with sulfasalazine, and steriod enemas to control flare ups. These flare ups came about once a year. They always coincided with my attempts to quit smoking. I understand it is fairly common for folks to get their first flare up from UC after quitting smoking or a similar "trauma" on the body, like having a baby.
I had a major UC flare in 2001 after the birth of my son. We could not get it under control and I ended up in the hospital for a month - IV steroids, cyclosprorene, nothing was helping. My last colonoscopy suspected I may have Crohn's, not UC, so we started Remicade and I was released from hospital.
My colon perforated 3 weeks later. The working diagosis was still UC, so my colon was removed and I was given an ileostomy. I had a j-pouch formed a year later, and my final ileostomy take-down 3 months after that.
Life was great for 7 years! No colon, so I was disease free! Woo hoo!
Good for me that I quit smoking FOR GOOD in May 2007, but a year later, I started having issues.... urgency, frequency, accidents.
A j-pouch scope revealed severe inflammation - CD was again discussed as a possibility, but my doc decided it was more likely pouchitis. We treated FOR A YEAR on and off with heavy antibiotics. Another scope in June 2009 determined that it was CD for sure.
I can't tell you the disappointment and utterly crushing feeling of being diagnosed with a chronic disease after thinking since 2001 that I was DONE with diseases. I still have difficulty wrapping my head around it and part of me refuses to believe I actually have Crohn's Disease. It's still hard for me to make the words come out of my mouth.
I opted for Remicade, but had a bad reaction after 1 treatment. My doc and I went back and forth about what to try - Imuran, Methrowhatever, Humira, etc. He really wanted me to go with Humira. But my gut feeling was that this was not the drug for me. I read lots and the success rate didn't seem as high as I would like. And the side effets, while rare, were too scary for me (Lymphoma? No thanks.) Understand that I get EVERY side effect of any drug I ever take. I had a reaction to cyclosporene that my doc had only seen once in 30 years!
Fate, kismet, karma - whatever you call it - led me to consult a doctor that practices Functional Medicine. "Treat the patient - not the disease." I opted for his suggested course of treatment - drastic diet change, heavy course of pro- and prebiotics, vitamins, supplements, nutrient infusions, wheat grass juice every day!
I feel better than I have in 2 years. I am still tapering down off the prednisone (boy, does that take a long time!) and am currently at 20 mg (started at 40 mg 6 months ago). My "traditional" doc thinks I am off my rocker, but the proof is in the numbers. My c-reactive protein is almost down to normal. I feel great. I look great.
The lifestyle changes have been very difficult and the treatments very expensive. Of course, they are not covered. The Humira costs $15,000 a year on average, with a monthly co-pay for the patient of about $20. I only wish I could have even a fraction of the money the insurance company is willing to spend on that drug to put toward my alternative course of treatment!
I still struggle with the diagnosis. It has been very consuming for me and I look forward to a time when I can wake up and not think about it, even for one day. But for now, I press on. I am thankful to have a very supportive husband, without whom I don't think I could get thru this, parents, in-laws, employer, etc. Being "sick" has shown me just how lucky I am.
The dietary changes (mostly vegan except egg whites and small fish) have been challenging but forced me to be really creative. I spend most of my free time in the kitchen (and thankfully NOT in the bathroom!).
So this was not as short as I would have liked, and even if no one reads it, I feel better getting it all out there in words.
I am thankful to have found this site as reading about other's experiences has been really helpful. Thanks for listening!
- Amy
I hope they keep working after you're done with the prednisone too. Good luck!
